Friday, May 30, 2008

She was in good spirits for the day, except when she had to drink the prep drink, but daddy managed to get it in her.

Ally made friends with another baby she met at the hospital, and she got to meet her Great-Grammy and Great-Uncle for the first time!

She made lots of friends with other people in the hospital by being super cute and walking around and waving at people.

She was a good eater when she came out of it, and has already had 2 and a 1/2 yogurts in just a couple of hours.

The surgeon will look at her scan on Monday, and assuming there are no surprises she will have surgery on Tuesday. The doctor said that because the surgery is so long, it is going to take Ally a while to recover. They want to wait for her to recover from the surgery before they start the 6th round of chemo. They would not give us an estimate on that; so we could be in the hospital anywhere from 1 and a 1/2 to 3 weeks.

They also want us to keep giving her Thrush meds, even though she is clear, they just don't want her to have Thrush on surgery day.

Every gun that is made, every warship launched, every rocket fired signifies, in the final sense, a theft from those who hunger and are not fed, those who are cold and are not clothed. This world in arms is not spending money alone. It is spending the sweat of its laborers, the genius of its scientists, the hopes of its children. The cost of one modern heavy bomber is this: a modern brick school in more than 30 cities. It is two electric power plants, each serving a town of 60,000 population. It is two fine, fully equipped hospitals. It is some fifty miles of concrete pavement. We pay for a single fighter plane with a half million bushels of wheat. We pay for a single destroyer with new homes that could have housed more than 8,000 people. This is, I repeat, the best way of life to be found on the road the world has been taking. This is not a way of life at all, in any true sense. Under the cloud of threatening war, it is humanity hanging from a cross of iron. [...] Is there no other way the world may live?

-Dwight David Eisenhower, "The Chance for Peace," speech given to the American Society of Newspaper Editors, Apr. 16, 1953.

"Put it on the ground,Spread it all around;Dig it with a hoe,It will make your flowers grow!"

Very long day at work today, some of it waiting for me in the morning. A fairly good day's work would be 60-70 police and coroners' specimens (for alcohol and drug testing, mostly); our old record was 170, and today we got 181. At least a hundred of them were drunk driving stops in one county over the weekend; we had hoped the cool weather and high gasoline prices would put a damper on that sort of thing, but no such luck.

And now to bed. Will try to remember to get a card for Alex on my way to work in the morning.

TTFN Alan in CA | 05.29.08 - 3:52 am |

Sleep apnea. Yeah, right...He couldn't even eat solid food when they sent him back for his third tour, after being injured by a roadside bomb in his second tour.

This soldier was from Castleton, VT (about 20 miles from my house). He had a wife and 3 small children. His aunt (mother's sister) is Mia Farrow, who wrote on her webste:

"I hope I never see George W Bush. I could not shake his hand. He and his cabal have killed my beautiful nephew just as surely as if they had shot him. May God, if there is one, forgive them. I cannot."http://www.miafarrow.org/ Jessica | 05.29.08 - 7:58 am |

"To date all the family has heard from the Army is that Jason variously died "in his sleep" and "in his bunk" and "in his quarters" and my favorite "sleep apnea complicated by smoking cigarettes," in other words, natural causes...His death will not be counted as a war casualty." Jessica | 05.29.08 - 8:16 am | #

I've been lately thinking about my life's time, all the things I've done and how it's been. And I can't help believing in my own mind, I know I'm gonna hate to see it end. I've seen a lot of sunshine, slept out in the rain, spent a night or two all on my own. I've known my lady's pleasures, had myself some friends, spent a time or two in my own home.

I have to say it now, it's been good life all in all, it's really fine to have a chance to hang around. and lie there by the fire and watch the evening tire while all my friends and my old lady sit and pass a pipe around. And talk of poems and prayers and promises and things that we believe in. How sweet it is to love someone, how right it is to care. How long it's been since yesterday, what about tomorrow and what about our dreams and all the memories we share?

Days they pass so quickly now, the nights are seldom long. Time around me whispers when it's cold. The changes somehow frightens me, still I have to smile. It turns me on to think of growing old. For though my life's been good to me there's still so much to do. So many things my mind has never known. I'd like to raise a family, I'd like to sail away and dance across the mountains on the moon.

I have to say it now, it's been good life all in all, it's really fine to have a chance to hang around. and lie there by the fire and watch the evening tire while all my friends and my old lady sit and pass a pipe around. And talk of poems and prayers and promises and things that we believe in. How sweet it is to love someone, how right it is to care. How long it's been since yesterday, what about tomorrow and what about our dreams and all the memories we share?

Parents Sent 5-Year-Old to School With Tape Recorder

By JONANN BRADY

May 27, 2008 —

Ignorant. Pathetic. Self-absorbed.

Those are some of the harsh names an Indiana kindergarten teacher called one of her students, and the boy's parents captured it all on tape.

Five-year-old Gabriel Ross complained over the school year that his teacher, Kristen Woodward, was being mean to him, said his mother Tabitha McMahan and stepfather J.R. Edwards. Gabriel told them other kids didn't like him because he was "bad and stupid."

When he began acting out at home, they decided to take action and try to find out what was going on in the classroom. So in mid-April, McMahan and Edwards sent Gabriel to school with a tape recorder in the pocket of his cargo pants.

What they heard over four hours of tape shocked them. Woodward can be heard telling Gabriel that he had "tortured and tormented" her and other teachers all year.

"I've been more than nice to you all year long and you've been ignorant, selfish, self-absorbed, the whole thing! I'm done!" Woodward says to Gabriel on the tape.

For the rest of the article, click post title ~~

Hattip tolistener♥

My view? Quiet, peace loving Quaker that I am? This woman should be run over by a school bus, and her remains transfered to Florida to feed the alligators. At minimum. . . .

Tuesday, May 27, 2008

Ally had another great day today! It is lots of fun to see her taking more and more steps.

We found out that her surgery will be next Tuesday. We have to be at the hospital for 6AM. It is going to be an all day process. The surgeon spoke with Ally's Daddy today and gave the impression that recovery will take just the rest of the week. Ally is scheduled to start chemo on the 6th, which is just 3 days after her surgery, so we are not sure if that will happen. It will probably depend on how quickly she recovers. We assume that she will just be in the hospital from next Tuesday until round 6 of chemo is over.

Ally had a super weekend. She was in a good mood for all of her visitors and walks. She enjoyed some ice cream yesterday. The weather must be making her feel a lot better, because we have not had to give her any anti-puke meds the past couple days AND she was walking around like crazy yesterday! She just up and started walking to mommy and daddy. She is good for about a half dozen steps before she teeters and falls, but she kept doing it over and over!

All of her walking must have given her so much energy, because she did not go to sleep until after 10:00 last night!

Monday, May 26, 2008

We have not heard back from the hospital about her blood counts, but we are thinking they are only going to call us if something is bad, because it is Sunday.

The nurse did weigh her, and she is back down to 16 pounds 13 ounces (on the visiting nurse scale...which always seems a little lower than the hospital scale).

So far Ally has had another super day. We have been able to keep her off the steriod, and have given her the back up no puke meds, just as a precaution. We might even stop doing that today. She LOVED the walk we went on. We stopped at the playground and had SUPER LOTS of fun going down the slides and riding on the swings. It was Ally's first time at a playground. (Next time we need to remember the purell!)

Up next is her CT scan on Friday, this will be the stinky day where she won't be able to eat or drink for most if it :(

Friday, May 23, 2008

FRIDAY, MAY 23, 2008 07:09 PM, EDTYayyyyy!

Ally had a super day! She was smiles and giggles, loved her walk and took an hour and a half nap this afternoon. Today she decided the best food (and therefore the only food) to eat was bread with raspberry jam and chocolate pediasure!

As the evening moved on she did get a little moody, but was always able to pull out of a sad mood very quickly. We are going to try not giving her the steriod tonight, as she has not thrown up since yesterday morning. We will have the backup meds ready to go in her room, just in case.

We are hoping this long weekend is full of super fun walks and playing with Ally!

Going forward...the Ally Plan is:Mondays and Thursdays: Visiting Nurse doing a check in and taking bloodMay 30th: CT ScanEarly June: Surgery to remove what they can of the rest of the tumorJune 6ish: 6th ChemoLate June: More Scans and testsJulyish: Radiation/Chemo 7/Stem Cell Transplant in Boston.

Thursday, May 22, 2008

It's been a while, huh? Sometimes I'm reminded how small the world really is. (Other times it seems bigger than ever!)

Today, Tanner had a visit with his Oncology docs. The whole way there he was talking about "his hospital, his doctors, and his nurses." He told me that no girls are allowed at his hospital, only boys! I told him that girls get sick too and need the doctors to help them. He thought for a couple seconds and said "Oh yeah, your right, girls and boys can be at my hospital." Gosh, I love that boy!

We hadn't been to see Oncology in a year or so! We've been seeing Tanner's liver doc, Dr. Book, every couple months, so I figured she had things under control. But, since I'm sure oncology was desperately missing us, hehe, we went in. They stated the obvious, that Tanner looks great. He really does. He weighs almost double what he did when he was first diagnosed. Isn't that amazing? He has come so far. The plan for oncology is to get scans and a heart echo in 6 months. Then again at the five year mark! After the visit in six months, he'll go see them once a year.

One of Tanner's original doctors, Dr. Meeker, saw his name down for today and came in to say hi. Can I just say how much we adore him? We adore him! (This is the part that made me think how small the world is) I was telling him about the Hepatoblastoma Foundation that we(a bunch of hepatoblastoma parents)are working to set up. (I don't think I've mentioned it! I will in a future update... www.hepatoblastomafoundation.org ) He was saying how when he was back East doing his residency he had a patient named Alex who opened a lemonade stand. I kind of exclaimed "Alex Scott?!" I told him about our friends in Tennessee and their amazing daughter who has been raising money through Alex's lemonade stand and received an award for her efforts. Small world! Although, not small enough that I've actually been able to meet the friends I talk of. One day maybe....

Dr. Meeker is joining the Bone Marrow Transplant Team at PCMC in July as an Attending, and recently found out that his application for a research grant from Alex Scott's foundation was approved. Small Small world!

Anyway...Tanner's doing well, and we're all doing our best to hang in there...

Ally's day got better as it moved on. She was able to keep all of her food down, she successfully took her first dose of Thrush Meds without incident and her blood counts are great. (Her counts have not started to drop yet, by Monday they should be lower.)

After dinner tonight we played a game of:"Ally where is your..." she was successful at identifying her: drink, yogurt, nose, ear, elbow (she points to her wrist, but she is tiny and her arm is not that big), sock, toes, pacifier, daddy, mommy, and mouth. We are scared to try to teach the eye, for fear of her poking herself in the eye many times!

She woke up super cute around 6:30 by making noises and then sticking her fingers on her nose to indicate that daddy is stinky!

She took a short nap in the morning and woke up when Grammy and Grampa got there to visit.

About an hour later she got Benadryl and blood, thus she took another nap!

She ventured out into the hospital and found her favorite statue (of an owl) and played around that for a while, much to the delight of the people in the waiting room nearby. While on her walk she discovered if she leans really far to one side and sort of rolls she can almost make it out of the wagon (she could actually make it out of the wagon, but someone was there to catch her)!

Towards the afternoon she started to get grumpy and daddy was trying to have her take another nap......I am not sure how that went!

All day she would ONLY eat chocolate pediasure.

Her daddy said she was in a good mood for much of the day and that chemo is scheduled to begin around 6:00.

Ally's doctors are telling her Daddy that she should be released in the morning tomorrow, which means between 11 and 3 in hospital time!

Sunday, May 18, 2008

Chemo was moved up to about 10 last night, so we are aiming for 8 tonight! And then hopefully 6 on Monday.

Ally is having the roid rage* today! To help prevent puking they have her on steroids every 8 hours. 2 good points: no puke so far, and she is eating like a normal baby! 1 bad point: she is very easily upset and cries loudly when she doesn't get what she wants. We have decided we can deal with the mood swings as long as she is eating and not puking! (When she is in a good mood, it is very good!)

*Note: Roid rage is a term given to people who act in very aggressive or hostile manner after taking large doses, usually on a regular basis, of anabolic steroids, sometimes nicknamed as roids.

Saturday, May 17, 2008

SATURDAY, MAY 17, 2008 12:16 PM, EDTFrom Ally's Mom...

Chemo was started around 11:30 last night. It was over around 2:30 this morning. Remarkably Ally slept through most of the tubes being hooked up and such. I was actually able to sleep from about 1:30 to 5:30 as well! The plan tonight is to start chemo around 9:30 and tomorrow they can move it up to 7:30 and for 5:30 on Monday. The doc said we should be out of here by Tuesday!

Her surgery is scheduled (we are waiting for the date from the doc) and we found out Ally will be here for about 5-7 days after the surgery, which may take us into her 6th round of chemo. It is all a little foggy right now.

We talked to her doctor, and we are holding off on her "weekend meds" because they can sometimes cause her to throw up, so we are going to wait until mid week to give them to her. And we are going to start her on stronger anti-puke meds right away as a preventative step.

Stay tuned later for a cool update about her weight...I have to go now, because she wants mommy.

Friday, May 16, 2008

FRIDAY, MAY 16, 2008 08:36 PM, EDTOff to a slow start...

Ally has been at the hospital for 12 hours. She has not started chemo. They told us she needed to do an 8 hour urine to check her kidney function before they could start chemo. She was released from the catheter around 6:00 tonight. We are not really sure about when the test results are going to be in, and if chemo will start in the middle of the night, or if it will wait until tomorrow, which means we could be here until Wednesday. I also overheard a nurse talking on the phone saying they were very short staffed and there were many kids needing chemo tonight.

Ally had to stay pretty still (in a bed) for the 8 hours she had the catheter, and Daddy tells me she did really well with that. She ate lots today and her spirits were good.

She normally goes to bed by 8:00, but as the clock turns to 8:45 here, she is still awake and playing in her crib. (throwing her pacifiers out of the crib, ripping up the blankets, trying to pull the sheet off, etc.) We are hoping she will tucker out and fall asleep soon. If chemo comes in the middle of the night she will have to be woken up.

Ahhhhhhh, the challenges of hospital life. I guess it would be too easy for things to run smoothly.

20 Minutes after I posted this the first time: The nurse came in and said Ally passed her urine test and chemo is on the floor, it is just a matter of time management before she gets it!

We are back to the hospital tomorrow. An early start. Ally, Daddy, Grammy and Grampa need to be there for 8:30.

This time Ally gets chemo for just a couple of hours a day, on Fri, Sat, Sun, Mon and then needs a fluids flush until Tuesday. These are the same chemo drugs that made her throw up for almost 2 weeks straight. We are hoping to be more proactive with anti-throw up meds, and now we kind of know what to expect. We packed lots of extra clothes for her and hopefully this time the chemo won't be as mean to her.

Today...Note: Ally's Great Aunt listener stopped by the hospital this afternoon and dropped off some goodies for Ally & parents with a gift card for a restaurant that is local to both the hospital and their house . . . as well as a card for the Pediatric Oncology Nurses who are the cream of the crop, with something to go with all the cream: cookies and Green Mountain Coffee Roasters (both Vermont Country Blend regular and Rainforest Nut Decaf). :-)

Monday, May 12, 2008

SUNDAY, MAY 11, 2008 07:28 PM, EDT

Today was a fantastic Mother's Day!

MONDAY, MAY 12, 2008 06:50 PM, EDT

Today was a good day for Ally. She ate well, was in a good mood and took a couple nice naps.

We still do not have the test results from the blood they took this morning, but we are not expecting anything weird to show up. The nurse weighed her this morning and she was a whopping 16 pounds 13 ounces. Down from when she entered for chemo last time, but her brief hospital stay and sickness last week really knocked her out. We are hoping she does not drop below 16 pounds again with this round of chemo. (This is the same as round 3, which really wiped her out last time).

Sunday, May 11, 2008

About Me

Water gathering
most days I wait
through blue and sun
till dusk
or even later
and the rose has faded
to lavender, to gray
some days, the sleet
has started
and the leaves underfoot
are slick with ice
somehow I'm never sorry
and never learn
one night I waited
till the stars were out
dropped the bucket into
sound, only felt the weight
of it filling
and the night full of stars
and the river full of stars
and the bucket full of stars
come morning, the coffee
is also full of stars